ATLANTA, Ga. -- A daughter describes her battle against the disease that is stealing her mother's memory -- and the federal and state regulations that make it hard for her immigrant mother to get help.
"It's really hard to see it destroy someone," said Jenny Dávila, referring to her mother, Ana Caballero, who has Alzheimer's disease.
Ana’s disease is the most common form of dementia, or memory loss, and other mental functions affecting the daily life of those who have it—and their families, according to the Alzheimer's Association.
For Dávila and her brother, Ana’s only caregivers, life has taken a turn, leaving her two adult children unable to understand how this strong, independent woman now requires constant care and attention.
Hispanics at High Risk
"My mother is a divorced woman. It’s thanks to her we are what we are. She fought alone as a good warrior and suddenly to see her so helpless, so lost in a world you can’t even enter," Dávila said.
Ana's daughter thought that her mother, a native of Bolivia, was somehow less at risk of getting dementia because she is Hispanic and there was no history of the disease in her family.
"When you hear about Alzheimer's, you think it's a disease among Americans living in this country, but you never think it's going to affect you as a Hispanic," she said.
Alzheimer's & Its Stages
Alzheimer’s is the most common firm of dementia, or loss of memory and other mental functions. It is a physical disease and progresses well beyond normal memory loss with age. Doctors have identified seven stages of the disease.
» First stage: Alzheimer’s begins attacking the brain before a person experiences any memory problems or symptoms obvious to medical professionals.
» Second stage: The individual notices memory lapses similar to normal memory loss in aging, such as forgetting words they know or where they placed everyday objects. These problems are not evident during medical exams, nor are they apparent to friends, family or colleagues.
» Third stage: Family members notice the person’s unusual difficulty in finding words, remembering names and performing social or work-related tasks.
» Fourth stage: Lack of memory of recent events, increased difficulty performing complex tasks, such as planning dinner for guests, paying bills or managing finances.
» Fifth stage: Those with Alzheimer’s have trouble remembering their current address, phone number or the name of the school or college they attended. They might confuse where they are or what day it is.
» Sixth stage: Memory problems continue to worses, significant changes in personality can occur and individuals affected by the disease need considerable help in daily activities. They may not recognize loved ones.
» Seventh stage: Individuals lose the ability to respond to their environment, speak and eventually control their movements. They may still be able to say certain words or phrases. In this stage, individuals need help with most of their personal daily care, including eating and relieving themselves. They may lose the ability to smile, sit down without help and hold their head up.
Source: Alzheimer’s Association
But according to statistics from the Centers for Disease Control and Prevention (CDC), Latinos are one of the groups most at risk to develop Alzheimer's.
"Latinos are 1.5 percent more likely to develop Alzheimer's than non-Hispanic whites," said Dolores Gallagher Thompson of Stanford University’s Geratric Education Center.
The disease’s prevalence among Latinos is not due to genetics. According to the National Hispanic Council on Aging, conditions like high blood pressure and diabetes, which increase the risk of developing Alzheimer's and other dementias, are common among Hispanics.
Although Latinos and African Americans are among the groups most at risk of developing Alzheimer's, both ethnic communities are also among those that take longer to be diagnosed, according to Gallagher Thompson.
According to research by Georgetown University’s Center on an Aging Society, Latinos are less likely to go to the doctor for routine medical check-ups, which affects how they treat conditions like diabetes and high blood pressure. This puts them at greater risk for Alzheimer's and other types of dementia and affects their early diagnosis.
Dávila, whose mother was diagnosed almost four years ago, knew very little about Alzheimer's.
"The doctor said my Mom had the early stages of Alzheimer's. We were scared," said the Bolivian. She immediately began searching online for information about the degenerative brain disease.
"She started repeating stories or she would forget things. We thought it was old age," said Dávila.
But Ana was only 61 years old at the time. The diagnosis of this kind of dementia is more common among people over 65.
One in eight people over the age of 65 has Alzheimer’s, according to the Alzheimer’s Association. The risk of developing the disease increases with people over 85, 45 percent of whom have Alzheimer’s.
It’s also one of the diseases in which the extent of the damage it will have on a patient is hard to predict.
Dávila said the changes her mother went through happened abruptly, and eventually led her to stop driving and stop being able to go to the bathroom by herself. Now she can’t even be at home alone.
“She doesn’t tell you if she’s cold, if she’s hungry, she doesn’t say, ‘It hurts.’ She doesn’t talk to you anymore. She repeats two or three words. You can’t have a conversation with her anymore. In the end, you have to spoon-feed her,” the daughter explains.
Services Lacking for Immigrants
The family faces another challenge: the lack of services available to patients like Ana who can’t access the public health plan Medicaid because they are under 65.
Patients also must fulfill the requirements of being citizens or permanent residents. In Ana’s case, she is a permanent resident of the United States, but she has had residency for fewer than five years, one of the requirements in Georgia to access the medical program.
“She has no health care. We have to pay for everything,” said Dávila.
This year the family hopes the situation will be different because Ana will turn 65 and she will also have been a permanent resident for five years.
So the family will look for an adult day care center where someone can take care of her on weekdays, so her caregivers can go to work.
“My brother works, I work and she needs help 24-hours a day. We always depend on someone to watch her,” explained Dávila.
“It’s really hard as Latinos because we are very loving and family-oriented, but there comes a time when you have to make a decision because you know you can’t help,” she added.
Johanes Rosello wrote this article for Mundo Hispánico in Atlanta with support from the MetLife Foundation Journalists in Aging Fellows program, a project of New America Media and the Gerontological Society of America.